REFERENCES

1. Le Cam Y, Bolz-johnson M. Expert by experience: valuing patient engagement in healthcare. In: Pomey M, Denis J, Dumez V, editors. Patient engagement. Cham: Springer International Publishing; 2019. p. 233-67.

2. Public Health. Available from: https://ec.europa.eu/health/ern/networks_en. [Last accessed on 23 Aug 2021].

3. Harrington RL, Hanna ML, Oehrlein EM, et al. Defining patient engagement in research: results of a systematic review and analysis: report of the ISPOR patient-centered special interest group. Value Heal 2020;23:677-88.

4. Bolz-Johnson M, Meek J, Hoogerbrugge N. “Patient Journeys”: improving care by patient involvement. Eur J Hum Genet 2020;28:141-3.

5. Rosaria T, Sara C, Valentina L, et al. RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks. Orphanet J Rare Dis 2020;15:347.

6. Smith M, Alexander E, Marcinkute R, et al. Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders. Orphanet J Rare Dis 2020;15:103.

7. EURORDIS - The Voice of Rare Disease Patients in Europe. Available from: https://www.eurordis.org/. [Last accessed on 23 Aug 2021].

8. Abelson J, Humphrey A, Syrowatka A, Bidonde J, Judd M. Evaluating patient, family and public engagement in health services improvement and system redesign. Healthc Q 2018;21:61-7.

9. Impact framework. Available from: https://www.england.nhs.uk/sustainableimprovement/impact-framework/. [Last accessed on 23 Aug 2021].

10. van Mierlo B. Reflexive monitoring in action. A guide for monitoring system innovation projects. 2010. Available from: https://library.wur.nl/WebQuery/wurpubs/reports/395732. [Last accessed on 23 Aug 2021].

11. Vat LE, Finlay T, Robinson P, et al. Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Heal Expect 2021;24:419-506.

12. Boivin A, L’Espérance A, Gauvin FP, et al. Patient and public engagement in research and health system decision making: A systematic review of evaluation tools. Heal Expect 2018;21:1075-84.

Rare Disease and Orphan Drugs Journal
ISSN 2771-2893 (Online)
Follow Us

Portico

All published articles are preserved here permanently:

https://www.portico.org/publishers/oae/

Portico

All published articles are preserved here permanently:

https://www.portico.org/publishers/oae/